How many times have we been out in the community and someone walks up to our friend with down syndrome and speaks to them in an extremely slow and loud manner? How many of us have observed someone in the community congratulating someone with a disability on doing something not worth congratulating them on, or that in the viewer’s mind, is typically only achievable by a non-disabled person. Have you ever heard the phrase “well you don’t look disabled sweetheart.” And then, my personal favorite, “honey, you are such an inspiration for all of us.” Although many of these statements are motivated by good intentions, they often focus on the individual’s disability as if that is the primary aspect of that person rather than their sense of humor, talents and unique personality traits.
Welcome to the wonderful world of ableism. Ableism is discrimination against people with disabilities, based on the belief that typical abilities are superior. It views disabilities as needing “fixing” and spreads harmful stereotypes. Individual ableism leads to systemic ableism, creating barriers that exclude disabled people from full participation. Ableism is the belief that cognitive abilities, communication challenges and bodies that don’t look or work the same as others somehow indicates that someone is less important or less valuable. It also suggests that someone’s abilities and appearance determine their social worth.
Approximately 1.3 billion people on this planet have a defined disability. That equates to 16% of the world’s population; however, many cultures still face challenges with accepting disabled individuals as simply peers and contributing members of society.
Ableism can manifest through comments and ideas, often stemming from ignorance and misinformation. It can take many forms, impacting individuals with disabilities in various ways. Ableism appears in society on institutional, interpersonal, and internal levels. Institutional ableism stems from the belief that disabilities need fixing, influencing medical teachings and health policies, and ultimately affecting patient treatment negatively. On an interpersonal level, disabilities are often seen as something to be corrected rather than accepted, making social interactions difficult. The harmful notion that disability accommodations are privileges, not rights, also prevails and a sense of benevolent ableism perceives people with disabilities as weak or needing rescue, which patronizes them and undermines their autonomy.
Having focused on the definitions and types of ableism faced by many of the individuals that we serve, it is imperative that staff working in the disabilities field understand these concepts as they are often the front lines for educating the community and driving systemic change. Too often, direct care and front-line staff perceive their jobs as merely providing care and to meet the basic needs of the individuals that they are working with. These perceptions are once again, often driven internally by misguided belief systems and a lack of awareness but also sometimes by the administrative tone of the specific organization. As someone who has directed programs for years in this field, it is often easy to get caught up in the numbers of people served and what activities are scheduled that week. Although good internal programming is extremely important, I have learned that kindness, awareness, empathy, respect and a healthy sense of humor are the most important traits for staff and that a well-trained and educated staff are integral in supporting those that we serve. Staff who treat the individuals they serve as equals and peers with distinct personalities and abilities play a crucial role in fostering community connections and altering societal views and preconceived ideas about individuals with disabilities.
As my career winds down after almost forty years in this field I have found myself in a place that truly sees the value in everyone, regardless of cognitive, physical, communication or behavioral challenges. When the administration’s primary focus is on issues such as quality of care, staff development and facilitating opportunities for acceptance within the larger community ableism is just another barrier to be broken. By developing our team and valuing their contributions as they work with their friends both in the facility and in the community, it is evident that staff are aware of the importance of their daily contributions and how they can impact the lives of those that they are privileged to serve.
And next time someone walks up to one of our staff in the community and says, “oh you’re such an amazing person, what you do is so precious,” hopefully the response will be, “thank you but I’m just hanging out with some of my friends.”
By: Greg Lineham